Harvey Max Chochinov, MD PhD FRCPC FRSC
Canada Research Chair in Palliative Care
Distinguished Professor-Department of Psychiatry
University of Manitoba, Canada
Director-Manitoba Palliative Care Research Unit, CancerCare
Dr. Baile: Hi. I'm Dr. Walter Baile, director of the MD Anderson Interpersonal Communication and Relationship Enhancement program. We're pleased today to welcome for our I*CARE round table discussion Dr. Harvey Max Chochinov. Dr. Chochinov is a distinguished professor of psychiatry at the University of Manitoba and director of the Manitoba palliative care research unit, cancercare Manitoba. He did his undergraduate medical training and psychiatric residency at the University of Manitoba; and then completed a fellowship in psychiatric oncology at memorial Sloan-Kettering cancer center in New York. In 1998, he completed a Ph.D. in the faculty of community health sciences, University of Manitoba. Dr. Chochinov has been doing palliative care research since 1990 with funding support from local, provincial, and national granting agencies. He's a grantee of the Canadian Institutes of Health Research, the National Cancer Institute of Canada, and the National Institute of Health. His work has very importantly explored various psychiatric dimensions of palliative care such as depression, desire for death, will to live, and dignity at the end of life. His seminal publications addressing the psychosocial dimensions of palliation have helped define core-competencies and standards of end-of-life care. He holds the only Canada research chair in palliative care and is a member of the Governing Council of the Canadian Institutes of Health Research and also chairs the CIHR's Standing Committee on Ethics. Dr. Chochinov has been a guest lecturer in most academic institutions throughout Canada where he resides and the United States and many other institutions throughout the world. He's the only psychiatrist in Canada to be designated as a Soros Faculty Scholar for the Project on Death in America. He's also a recipient of the Queen's Golden Jubilee Medal and his province’s highest honour, the Order of Manitoba for his work in palliative care. In 2006, he received the Canadian Psychiatric Association's highest research award the J.M. Cleghorn Award for excellence and leadership in clinical research. And, in 2008, he was recipient of the National Cancer Institute and Canadian cancer society's Warwick Prize. The 2010 lifetime achievement award from the Canadian Association of Psychiatric Oncology as well as the 2010 International Psycho-oncology Society's Bernard Fox Memorial Award which recognizes an outstanding approach and contribution in education, research, and leadership in the field of psycho-oncology. Dr. Chochinov has published over 200 very important papers and is the co-editor of the "Handbook ofPpsychiatry in Palliative Medicine" published by Oxford University Press and theJjournal of Palliative and Supportive Care published by Cambridge University Press. Most recently he has written a wonderful book called "Dignity Therapy: Final WFrds for Final Days" which is also published by Oxford University Press, and this has really gathered rave reviews and is a very seminal work in our field. So welcome, Harvey. I wanted people to know --
Dr. Chochinov: Thank you.
-- about your accomplishments. And --
Oh, that's very kind.
A little bit of a long introduction but I think you've really done some extraordinarily important work in helping bring palliative care forward. Really essential things. You know, you and I both started out in life as traditional psychiatrists as have a couple of other of our guests here who've kind of wandered away from taking care of major mental illnesses into other fields which more related to psychiatry but very specialized. And I wonder maybe if you can talk a little bit about how you made that leap from your psychiatric training into psycho-oncology and, I guess, palliative care. I think that would be of interest for people to hear.
Actually, I -- I -- I would think that the -- looking back the leap probably began sometime during the course of -- of psychiatry residency training, itself. While we were going through rotations of consultation liaison psychiatry, I developed a particular interest in the area of psychiatry as it relates to cancer. That then segued to my going to Memorial Sloan-Kettering and doing a fellowship there in the psycho-oncology program. So, by the time I arrived back in Winnipeg in the late '80s, while I was doing psychiatric care, it was primarily within the -- the domain of -- of cancer care. Then a few years into that work I happened upon some work of a -- of a colleague Jim Brown who had published a really seminal paper in the American Journal of Psychiatry regarding whether or not it was ever normal for dying patients to -- to wish life to be over sooner. And that paper really was the -- the -- the launchpad, if you will, for my research or interest in -- in -- in research in that it -- it seemed a fascinating paper but one that we thought or hoped we might be able to -- to build upon. So that was the -- the entry point into palliative care and palliative care research. And, from that point forward, there really wasn't any looking back. I just became intrigued with research and the possibilities that research held to really shed light on the field.
Very interesting. And I think many folks who embrace fields related to psychiatry have been influenced by people in the field who have acted as role models and brought us something that has inspired us and so that's very interesting to hear. Can you talk a little bit about your research and what you're doing now and where you've been with palliative care research. I think that -- my impression is that really in the last maybe 15 years palliative care has come -- kind of come out of the closet in the sense that, you know, we really didn't talk much about death and hospice and end of life until not so many years ago and so I'd like to sort of hear, not only your thoughts about what's brought -- what's -- what's allowed us to have -- to begin to have those discussions and the research that has really helped us understand more about death and dying.
Sure. Well, again, if I think about my own research trajectory, it began in a place that my -- of my own personal comfort zone and -- and that was as a -- as a clinician working in psychiatry thinking that the important research questions -- and at the time they -- they felt important -- were traditionally psychiatric in nature. So looking at things like syndromal depression and how to diagnose depression, how to screen for depression. Looking at issues related to suicidality or desire for death and will to live. Those were the -- the early studies that -- that we began doing. But, over time, we eventually came to the insight that if we were going to go further into this field we needed to leave what I think of as a -- sort of a -- a more traditional DSM box and extend the -- the boundaries of -- of where psychiatry might normally venture. There was also an important empirical lead and that is that when we started to look at some data that was coming out of jurisdictions where euthanasia, assisted suicide, death hastening was being practiced, the literature was indicating that loss of dignity was oftentimes cited as the most likely reason why patients may lose the wish to continue living in the face of a -- of a -- of a life-limiting condition. Now, if dignity is worth dying for, one would think dignity is worth studying. And, at the same time, when we looked at the literature, we found there was really no empirical work on the issue of dignity. It -- it was something that was a highly-politicized term. People used it in a way that essentially justified whatever position they happen to adapt, vis-à-vis stance around end-of-life care. So that really led us into doing work on dignity and it's -- it's being work that has -- we've pursued for certainly the better part of the last decade. I think that's it begun to give us insights into a -- a broader perspective; I think a deeper understanding of the various issues that influence patients near the end of life; and, at the same time, starting to provide some clues as to how we might be able to mitigate some of the suffering that patient's experience in final days.
Could you say some more about that because I think that's really an important leap from studying, well, some of the more if we can call it "Pathological aspects" of loss of dignity and its relationship to suicide and desire for hastened death to the role of dignity as something important for everybody in the process of dying. And I wonder if you could say a little bit more about that.
Sure. Well, we -- we approached the study of dignity in -- in a variety of ways. We -- we initially approached it using quantitative techniques that, again, were within my personal comfort zone that allowed us to kind of get a sense of to what extent do people endorse or lose or experience what we called a "Fractured Sense of Dignity" and what are some of the correlates, what are some of the relationships between the undermining of dignity and things that people experience during the course of their dying. One of the -- the key findings and I -- I think important insights is that the one of the most important or predictive variables vis-à-vis dignity was the issue of appearance or how people perceive themselves to be seen. It's a bit of a mouthful; but, in essence, what is says is that patients look towards those of us in health care for some kind of affirmation. Now the -- the -- the great irony that I discover is we spend our entire career learning how to look after patients, and the one thing that no one wants to be is a patient. And so the -- the insight vis-à-vis dignity is how can we provide some form of affirmation or the -- a "tone of care" as we've called it in our work that is going to affirm personhood. All of us want to be seen, not for what ailment we have, but for the -- the -- the person that we are. So the -- the research and the dignity work has gone in a variety of directions in terms of measurement and outcome. Can we -- and -- and we have developed a -- an inventory that we call the "Patient dignity inventory." Can we put on a health care provider's radar a series of questions that will give them insights into the broad spectrum of things that might influence a patient's sense of dignity. You know, in traditional palliative care we would think the important things are, you know, making sure that someone is -- is symptom free. You know, we're looking after physical comfort. But the dignity approach or the dignity model, if you will, says you need to be mindful of the physical, the psychological, the spiritual, the existential. And, to make those things more -- to make them more tangible. If we can -- if we can provide care providers with some of the key questions, some of the key problem areas, that can facilitate some of the important conversations. In fact, we've just completed a -- a study that is -- is now in press where clinicians from across Canada who participated in the study and used this particular instrument have said that when they apply it to clinical care, in about 80% of instances, they learn something about the patient. At least one or more things about the patient that they didn't previously know. Now the -- the other major aspect of -- of the research -- and you mentioned the -- the book in your introduction -- has been the -- the development of something we call "Dignity therapy." Again, it's -- it's based on the -- the previous empirical work and some of the insights that we've gained along the way. I'd say the -- the key issues that it builds on is the realization that people -- no one wants to be forgotten or feel that their life didn't matter, that there wasn't some ripple effect as a result of having been here. And this goes back to a notion that we call "Generativity" borrowing from the developmental psychologist Erik Erikson. The idea that when we grow either very old or very sick our psychological energy starts to turn to the generation that will be left behind and what we might be able to do to help shepherd that generation along in a way that will be influenced by our -- our -- our good thoughts or good deeds or good wishes. So that was one insight. The other insight was the whole issue again of affirming. How can we impart in a very tangible way a message to someone nearing death that who they are, their thoughts, their words continue to be potent and continue to be important. And so dignity therapy takes advantage of -- of both of those things by saying can we develop a brief psychological intervention and -- and we have; that in the here now a firm sense of personhood by asking you questions about, you know: What are your important memories? What are the things that matter? What have you learned along the way? What are your hopes, wishes, dream for loved ones? Are there specific instructions to the people who will be here to -- to mourn your passing? Those series of questions are facilitated by a therapist so that they can really follow the leads of where the patient needs the conversation to go. Dignity is what people often have asked me so what do people need to talk about in dignity therapy and -- and is it elitist? Do you just need to talk about important things and important accomplishments that have been done by important people? And is it pollyannish? I mean, is it, you know, putting a happy face on -- on every life irrespective of -- of what that life was like? And the answer is dignity therapy needs to be what the person needs it to be. It can be happy recollections and sort of a imparting of thanks; or it can be an opportunity to try and make amends or to -- to say I'm sorry. You know, an old man who we had in one of our protocols said, "It's not only too late to say I'm sorry." He said, "It would be futile because I drank away most of my relationships and opportunities. And the reason I'm doing this is so that they're -- my grandchildren know who their grandfather was so they can choose a better way." These conversations are recorded and they're transcribed that the transcriptions which are edited so that they then can be given back as a -- a more pristine narrative or something that will transcend even the event of death and, again, that gets back to the notion of generativity. This document is then given to the patient, read to them, and finally approved by them and any changes made in order to meet that approval and a standard that would meet their comfort level for them to bequeath to whomever they choose. And -- and that in essence is what dignity therapy is about, where it's come from, and what it's goals and aspirations are.
I -- I think it's extraordinarily important this sort of life review and legacy that people want to leave. I was -- I wonder how many times you come across people either talking about regrets or speaking the unspeakable, what they haven't been able to say about their life to anyone before. Do you encounter that sort of opening up into things that people may have been harboring but never talked to anyone about that gets a little bit more into the psychiatric dimension? But...
It -- it -- it does. And -- and -- and certainly, yes, there are occasions when people say things that they -- they may not have said before. We had a -- you know, in -- in evaluating dignity therapy, we think that there are two populations that from whom information needs to be elicited: The patients themselves and -- and -- and the families. We've also done some studies looking at the -- the frail elderly at starting to move this into just sort of a less imminently dying cohorts of patients. And, you know, that's -- that's another group that we've -- that we've tried to -- to -- to look at this work in. But getting back to the information of -- now remind me. We were -- oh -- oh, of the -- of the unexpected, yes. We had one instance, I recall, of a -- of a woman who told us -- and this is a family member who told us that in the document was the only time in her life that she'd ever heard her father say to her, "I love you," which is really quite extraordinary. Regrets, apologies; absolutely. But I think maybe the -- the -- the warning is, as you pointed out -- I mean, it -- one has to be -- one has to realize that this isn't a traditional psychotherapy. This isn't uncovering work. And very oftentimes it -- it seems to me that issues that people struggled with for a protracted course of time and even in a state of good health were unable to broach. The likelihood that they're going to be able to do so successfully, you know, very proximate to dying is relatively narrow in my experience. Does it happen? Absolutely, it does happen. But the agenda of dignity therapy is really to provide people an opportunity to say the things that they need said. So it is about storytelling. It's about the imparting of wisdom. And one wants to make sure that if it starts to shift into a psychotherapeutic encounter that we -- we check with patients: Is this really part of a generativity agenda? You know, the fact that you are now disclosing, you know, issues that have to do with deep trauma or deep pain. It may be, you know, that in the presence of an empathic therapist there's this implicit permission to -- to say all, to tell all. But I think if we're going to adhere to the agenda of dignity therapy we need to be mindful that some of that material may not be the things that, in fact, patients would want shared and incorporate into a generativity exercise.
So it isn't psychotherapy?
Well, you know, it's -- it's -- it's psychotherapy more in the tradition of a supportive psychotherapy and, you know, more in the tradition of some of the existential work like, you know, a la Viktor Frankl and --
-- Bill Breitbart's work in -- in -- in meaning-centered therapy.
So, you know, I was -- I had been reflecting recently on teaching communication skills that how often it's overlooked that illnesses such as cancer bring with them such profound losses; not only loss of life projected into the future but loss of your connection with people; loss of -- financial loss; loss of autonomy; loss of ability to even make decisions on your own behalf because you end up being dependent and people kind of doing things to you. And what struck me is how those sort of things come together to produce loss of self-esteem. That people aren't connected with who they are and was thinking about -- as you were talking about dignity therapy, that it really counterbalances this sense also that folks have in a way lost a lot of identity and kind of reviewing who have they been and what's been important to them as a way of maybe restoring self-esteem. And I wondered whether or not that's something which you think is a -- would be -- as a reasonable goal for what the dignity therapy does with people too.
Well, you know, absolutely. You know, and I think dignity therapy functions at -- at -- at two levels. I mean, there's the here now. And then there is the -- the idea of generativity and the fact that this will produce something that will remain or transcend the event of death. As you -- as you rightly point out, I mean, the psychology of illness really is the psychology of loss and illness depending on how severe it is, is always taking away. You know, it takes away time. It takes away convenience. It takes away, as you said --
-- you know, the ability to -- to follow one's vocation and -- and fulfill roles. But, when illness becomes overwhelming and profound, it also starts to take away sense of self, sense of personhood.
And so one of the important and critical tasks for the person facilitating dignity therapy -- the dignity therapist, if you will, is to provide an experience in the here now that is affirming. The fact that I am sitting with you and I am listening to each and every word you're saying. I'm taking interest. And, in fact, such exquisite interest that we will record this, we will transcribe it, and we'll also do so within kind of an ethos of -- of immediacy. You know, if -- if this is an important task -- giving the message, well, we'll -- we'll book you in in a week or two when my schedule allows. That really undercuts the message of -- of its importance. So dignity therapy does have this ethos of immediacy because if -- especially, when we're working in palliative care, time is not working in our favor.
So, when we recruit somebody into a dignity therapy protocol, the -- the first thing we say after they've given consent is, how soon can we be back? Can we come tomorrow to -- to engage in this further conversation? And even the task of the transcription and the editing we try and do all of that as -- as quickly as possible. I mean, in an ideal case scenario, you know, if -- if you've given consent on a Monday, the following week we will be there reading the final transcript and having you listen to the way in which that has been shaped to determine whether or not this is now something that you would like to have and are prepared to bequeath to -- to those you'll leave behind. So the two levels I was referring to then -- the here now -- is making sure that you can provide patients that affirming experience. And the secondary agenda, although important -- I think is secondary -- is the fact that, yes, this will create something that you can share with family that they in turn can share with -- with other loved ones.
You know, I -- I think it's extraordinarily important having a methodology as such to help folks meet the end of their lives. But I was also struck by something you said about teaching clinicians to ask questions. And, you know, for better or for worse, that in rushing through the workup of patients these days on the part of our colleagues in oncology and palliative care, what I think is left out of the dialogue with the patient a lot is aspects of their personhood. Like, what did you do for a living? And, what are your kids doing? And, that must really be great that -- watch your son graduate from law school. And, what goals do you have? Things of that sort. And although that's not per se dignity therapy, it's sort of dignity enhancing.
And I wondered whether or not that that's an aspect, you know, when dignity therapy per se is not feasible for some reason or another that dignity enhancing conversation is something that you also teach to maybe clinicians who are in the process of routinely working up patients.
Absolutely. And -- and, when you suggested dignity therapy isn't for everyone, I -- I would underscore that that is absolutely correct. That dignity therapy is not some panacea, not -- not everybody will find it something that kind of resonates as being meaningful or important; and so, I think, we need to be mindful of the fact that each of us are -- are wired differently. Our needs during the course of our life are all very different; one from another. And our needs towards the end of life are going to be kind of equally diverse; and so we need to be respectful of where patients are at and what they need. But I -- I think your point about, you know, dignity enhancement or what we've coined in the literature "Dignity conserving care," is much broader than -- than dignity therapy. Dignity therapy is one very specific, you know, psychological intervention. Dignity conserving care really speaks to the fact that there are core competencies in all of medical care that should be implicit to the idea of being a -- a care provider. And so things that can affirm the value of individual's, that can acknowledge personhood need to be on every one of our radar. And so we've been exploring and looking at various ways in which we can help facilitate that between patients and their care providers. I mentioned the patient dignity inventory as -- as one such way. We've also been conducting a protocol that we call the -- the "patient dignity question." And, in essence, it -- it comes from an article that I had published a few years ago in the British medical journal the -- called the "A, B, C, D's of dignity conserving care." A for attitude; the attitude of the care provider that is. B, behavior; the way you are behaving towards a patient will have an influence on their sense of dignity. C for compassion. And D for dialogue or conversation. And the -- the common denominator to all of those is what can we as health care providers do to take advantage of the fact that we have a profound -- or have the ability to have a profound influence on the texture, on the tone of that interaction. And so this study on the patient dignity question really is looking at a very simple question which is: What can I -- what should I know about you as a person to take the best care of you that I can? That question frames a conversation that takes a few minutes. You know, it's -- it's not a difficult conversation and it's not meant to be a deeply psychologically uncovering sort of conversation. Again, it is not sort of mini psychotherapy. It can be as practical in terms of the responses as: You need to know I'm deaf in my left year. So, if you're going to talk to me, you better -- you know, better speak up and come over to my right side. It can be, you know: I'm -- I'm afraid of needles. We had one person -- a woman who was first nations aboriginal who said, "well, you need to know that, you know, with all of the things that I've experienced in my life, I'm really afraid of authority figures. You know, people in white coats scare me. And I don't -- I sometimes think that they don't think I'm smart enough to know all the information that I need to know. I'm not as frightened as I used to be. It's getting a little better but it's still a problem." Now, this conversation took all of a few minutes. You know, 5 minutes tops. And the protocol goes as follows: We -- we ask somebody if they want to be a part of this study. We have this conversation -- this brief conversation that, you know, sometimes needs some prompts. But, basically, looking at what do I need to know about you as a person to take the best care of you that I can. We then go off and summarize that in a paragraph or two. And we come back for -- for three purposes. One is to read it aloud to that person. Two is to check: Did we get it at -- is it accurate. You know, does -- does this say what you need it to say? And, three -- and, for me, this is the litmus test -- do you want this on your chart? You know, one would assume that if we get this right -- you know, if this is the lens through which you want others to see you, then you would expect to lens it, you would want everyone to have a chance to look through. And so far -- and we've done just over 60 patients or so. And all but one or two have said: Yes, that's something that I think, you know, could go on my chart.
So do you think that you'll be able to collect some data on whether or not the attending doctors and nurses actually bring these issues up with the patient in terms of recognize them, oh, I didn't know that you worked with the U.N. or wherever?
[Inaudible] Things of that sort, you know --
That's right. [inaudible]
Is that part of the project?
Well, part of the project is, you know, a very detailed evaluation and -- and --
-- of course, so we're going to be asking patients their and -- and families their thoughts but --
-- most -- well, I would say, you know, yes, perhaps most critical is have we changed anything about the perception of health care providers. And so the protocol includes enrolling health care providers with large -- whether, you know, you're a -- a unit clerk, whether you're a healthcare aid. So long as you have contact with the patients, does knowing this information influence your perceptions, does it influence your care, does it enhance compassion, does it help shape care in some way, does it disclose you didn't previously know. And we think that -- I mean, in palliative care -- I mean, palliative care is a bit of a Cadillac when it comes to communication. I mean, I think, you know, in -- in all -- of all the areas of medicine, it's probably an area that we do this pretty well.
But, if we can show a simple approach like this is able to make a change even within kind of a Cadillac milieu of -- what will it do in other areas --
-- that, you know -- you know, the -- Edsels. And so that the plan is to -- to look at that outcome and then see whether or not it can be incorporated into other areas of medical practice.
You know, this is so important because if there's any one thing that patients complain about about the medical -- medical care in this country it's being depersonalized and that I'm not treated as a person; I'm treated like a guinea pig; no one pays attention to what I want.
I felt just like any other patient.
Yeah. And so, you know, I was thinking that this big push over the last several years at least in the field of oncology to develop the personalized cancer therapy that what you're talking about is the real personalized cancer therapy. [Laughter] Well, thank you so much for talking with us today. And -- [inaudible speaker] -- good luck with your book. It just sounds to be really something extraordinarily timely.
And lots of success with that. So we've been talking today with Dr. Harvey Max Chochinov and thank him very much for his words of wisdom and look forward to having him back again sometime.
Thanks so much for [inaudible].
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